Life as a NICU dad

Nothing can prepare you as a parent to see your child born at 25 weeks’ gestation, as small as your hand with see-through skin, like a week-old Kangaroo on a wild life documentary. My story accounts for the journey so far of Oliver David Charles Kranenburg born on the 2^nd of June at just 810 grams, after 87 days in Brisbane’s Mater Mothers’ Hospital Neonatal Intensive Care Unit (NICU).

As a father to one amazing 5-year-old Angus, who many at Mater Mother’s Hospital know as the boy who reads books and adores his little brother and who now wants to be a surgeon to save kids’ lives just like Dr Chris Bourke who saved Oliver’s. Having a son and being a father has the biggest rewards and honour, I’m thankful every day that I get to call these two boys my sons. Father’s Day takes on a new meaning for me after our life changing event with Oliver. I now understand more about my own father and appreciate the effort and sometimes sacrifices he made for my brother and I, also how precious life is – especially your son’s.

From our 20 week scan we were told to expect a bumpy ride with Louise, my wife, in and out of hospital with a low lying placenta complication. We were told Oliver could be born early, maybe around 36 weeks. Returning to Mater within weeks of my father passing away was particularly difficult as I needed to be strong for Louise to not cause any further stress for the baby. We had been at Mater most days since February, and as I write this, Oliver is still in NICU. We sometimes ask ourselves what life outside the hospital will be like without our Mater family, the doctors, nurses, friends we have made in NICU and our stream of family and friends.

A few days prior to Oliver’s arrival, Louise was admitted to Mater Mothers. Our doctor had laid down a plan for us to get to 36 weeks, all going well. Our goal within the first 48 hours was to ward off going into labour. If we could get through the next 48 hours, we could be in the clear until the mid-30 weeks, all going well. Well, no sooner did I get home around 11.30pm that night, Louise calls me to say she’s in labour! Louise is someone who never complains when she’s sick or in pain and is always positive, seeing her in labour was truly something of admiration for her ability to handle extreme pain. Our doctor arrived not long after I did and as calm as a cyclone’s eye said: “We’re going to go have a baby!” For some reason I could only think about the following…. ‘We haven’t got anything set up for the baby at home – no cot, furniture, car seat, pram…. I’m not ready for this, I need to plan, execute and review to ensure we have everything as close to perfect as possible’.

As we were going down to level 5 for surgery to have our baby, who just couldn’t wait to see the world, I thought I was prepared to see a very small baby from seeing our friends’ premature triplets at 31 weeks. Just like that, after 30 mins which seemed like hours on the operating table, our baby was born! The joy and relief to hear that he was ok and that I could see him soon was overwhelming, so much so I was looking at the photos the anaesthetist took of our baby and forgot to show Louise, laying right next to me! I walked into the heated room where Oliver was being intubated so he could breathe – seeing him for the first time almost put me on the floor. Here was the smallest baby I had ever seen, nothing like our friends’ triplets, see-through skin, I could see his bones, blood vessels, he was just red and peaceful. I was in shock and couldn’t think of anything, only the fear of not understanding, not having the knowledge of what to expect next, was he going to be ok? Our world was about to enter a very deep unknown filled with survival statistics, alarm bells, machines, surgery and more acronyms than I was used to in aviation (that’s saying a lot).

The world of NICU for the first day or two was like what I imagine walking on the moon to be, very lonely, cold, incredibly risky, fearful and beautiful, an achievement just to be there and not a place you really want to be long, for the fear of the unknown. As we would soon learn, it’s a place of purple and pink Lazyboy chairs, amazing people, stories, friendships, doctors and nurses at the tops of their professions, stories of sadness yet happiness and our daily home for the long journey between four to six months, all going well. The doctors, nurses and friends who have had premature babies told us about the roller coaster, the one step forward and two back, the private pain you and others in the room feel and the joy of milestones ever so small. I remember thinking and saying to Louise that we were only going to climb the mountains and get over the hurdles that they speak of, only positive things will happen to our son. He’s a Kranenburg - full of strength and fight! I found my usual outlook only made the falls harder and the unbelievable pain that you feel when your son may not be alive when you wake or the next hour. We spent a lot of time just staring at him, praying, hoping and feeling the love for each other and others for us, as we go about existing in this strange bubble. You can never understand what the person with the child in the next bed is going through, you don’t know if to say hello sometimes, or hold them or when someone will have to hold you. It seems like everyone is going through what you are, or have been there at some stage, this makes you feel you’re not alone, and gives you hope when you see the joy, and fear when someone’s child passes away next to yours.

My worst fear happened ten days into Oliver’s life. After thinking he’s bullet proof, he’s a Kranenburg after all, he’s only going up the mountain of strength. One morning we found ourselves searching for answers and the knowledge for what was happening to Oliver. He was lifeless, not even a prick for blood would make him move, his stomach was expanding, weight down to 670 grams and breathing was not good. Could he just be tired, have an infection or something else going on? Tests, results from tests, more doctors and eventually some idea what was happening. Our doctor Richard Mausling is absolutely brilliant; his way of keeping us informed from day one has made all the difference to us. In a world of knowledge that I just don’t have, and struggle not having, he makes the road of positives and negatives very clear, delivered in the best possible manner. Our worst fears are known when we’re told he has an infection – meningitis. Not only that, an x-ray had shown a large pocket of air in his stomach and a surgeon needs to be called ASAP. As it turns out, someone was watching over Oliver and to our surprise, the consulting surgeon on shift was someone we know. Within 90 minutes Oliver is in surgery being operated on with a perforated bowl, by the best surgeon our consultant could call upon, Dr Chris Bourke. We’re told that the chances that even an adult surviving the operation were not great, given Oliver is now 26 weeks this news leaves me completely numb in a state of shock, thinking that within a space of six weeks I have lost my father and maybe my son. Dr Bourke emerges from the operating theatre with a smile and explains how bad it really was and how lucky Oliver is to be alive. The following months on the roller coaster was the usual one step forward, two steps backward until the last two weeks. Oliver is developing and growing, with chronic lung disease and after being seriously ill. The mile stones now are joyful, as our little fighter comes off the ventilator, CPAP and now this week on high flow oxygen. We know the unknown and risks will still be around for months and years to come, however, Oliver is alive and fighting to be present and healthy in this life.

It's these times you find strength in your wife and she in you, our bond even stronger than the day before, your parents, your friends, our nurses hold us and our son when needed. We celebrate with cupcakes and dad jokes, reflect on what was, and what will be, as we have hope that our road will be positive. It’s the staff at Mater Mothers that support you and your child every minute of the day, they’ll be in our heart forever and we hope our lives. We can finally see some light and guessing Oliver’s discharge date will in the next one to two months. I will be able to spend my days and nights staring at him as a father, being grateful his son fought for life, gave his mother the chance to be an amazing influence and to his brother, the little brother he has always wanted.

Contributed by Proud Mater Dad Nick Kranenburg on 27 August 2018